Christine Scheppa said she has cycled through more than 15 nurses since her severely disabled son Vinny returned home from a rehabilitation center following a 2016 skateboard accident.
“No one would show up. They would send poor quality nurses, inexperienced nurses that weren’t qualified to take care of him," said Christine Scheppa, of Garden City. Many nurses won’t work for the low Medicaid rate, she said.
Scheppa is a registered nurse herself, but state law does not allow a mother to earn a nurse’s salary taking care of a son or daughter. She’d be able to do so if she were taking care of a stranger.
Scheppa has been on a crusade to change that law, and on Monday the state Senate unanimously approved a bill authorizing nurse salaries for relatives caring for Medicaid-eligible loved ones.
“Caregivers are overlooked and underappreciated,” bill sponsor Sen. Kevin Thomas (D-Levittown) said at a Thursday news conference promoting the measure, named “Vincent Scheppa’s law.”
The same bill unanimously passed the Senate last year, only to die in the Assembly.
Vinny Scheppa, now 23, was on a fast-moving skateboard in May 2016 when it “came out from underneath him” and the left side of his head crashed against the pavement, shattering the left part of his skull, Christine Scheppa said. Doctors removed the right side to relieve bleeding in the brain, she said.
After seven months in a hospital and rehabilitation center, he came home.
“He is in a minimally conscious state,” Christine Scheppa said, as she stood near Vinny while a massage therapist she pays for out of pocket massaged his leg. “He cannot verbalize his needs. He does not communicate with me at all. I just hug him and tell him I love him, but I really don’t know if he can hear me or not.”
The state approved Medicaid-funded nursing care for Vinny, but “the Medicaid [reimbursement] rate is awful and it’s impossible to find nurses,” she said.
Multiple nurses who arrived didn't know how to care for someone with Vinny's needs, she said. One who provided high-quality care quit because she found a higher-paying job. There are three nurses who take care of Vinny now, but one regularly arrives late or calls in sick, Scheppa said.
In addition to the many hours Scheppa spends with Vinny while nurses are there, Scheppa cares for him for 40 hours a week on her own. The state pays her $12 an hour under a “personal assistant program,” she said.
The bill would allow her to earn the Medicaid rate for a licensed practical nurse — less than what she and other registered nurses typically earn. It is currently from $21.63 to $27.81 an hour, according to the state Department of Health.
Scheppa said it would be enough to allow her to cut back on the 48-plus hours of work from her patchwork of three nursing jobs to spend more time with Vinny. Scheppa said she makes between $40 and $55 an hour at her three RN jobs. All the positions are part time, to give her the flexibility to be at home if a nurse calls in sick, is late or on vacation.
The bill unanimously passed the Assembly health committee Feb. 28 and is now in the Ways and Means committee, where it died last year, said sponsor Assemb. Thomas Abinanti, a Westchester County Democrat.
Abinanti said there is a better chance of passage this year because “there’s more of an understanding” of the issue. He said the low Medicaid rates are part of a “chokehold on services for people with disabilities” under the administration of Gov. Andrew M. Cuomo.
Rich Azzopardi, a senior adviser to Cuomo, said in an email that “we’ll review the bill.”
"We are of course looking at Medicaid issues as part of the budget, something that, due to the reality of declining revenues and threats from Washington, is difficult,” he said. “In our experience, reality has never been the assemblyman's [Abinanti’s] thing."
It’s unclear how many people the law would affect. Nancy Speller, director of care coordination services for New Hyde Park-based St. Mary’s Healthcare System for Children, said she personally knows of at least a dozen.
Speller helped care for her son John James, who died at age 15 in 2005 from complications of a neurotransmitter disease. She’d sometimes spend 24 hours straight with him and then go to her registered-nurse job. She couldn’t afford to quit.
“I lost precious time with my son who was dying,” she said. “I wish this legislation had been in place when JJ was alive.”